Sorry about the double posting my computer was having a wobbly!!!!

Hello everyone,

I thought I would update you all with how my partner Keith is getting on, when I last spoke he was having a terrible, suicidal time with not being able to use his mask, due to the incredibly red raw sore nose inside.  He must have had 3-4 nights sleep without the mask, which enable the nose to heal a lot but not completely, but as you can imagine, made him like a zombie, he swears he cant go through that again without the mask, anyway, he slept for the next week or so beautifully, sometimes all through the night but making it about 7 hours a day/night, so things were a lot better,.

Now its all happening again. he just cant sleep, just 1 or 2 hours, obviously tired but so frightened to go bed, because of not being able to use the mask thus falling asleep without and having awful awful nightmares, so vivid and lucid which stay with him all day.  Anyway, he has had a heated humidifier but said it didnt help him, in fact quite the opposite, it made him feel as if his lungs were filling up with water- as if you he was drowning!

He this morning is trying irrigation with salty water now, sea salt type not the type with added whatever it is they add, the reason why he hasn't tried it is because his doctor very strictly said DO NOT IRRIGATE YOUR NOSE IN ANY CIRCUMSTANCES,  I said to him I think you have to try this, as the doctor probably does not know enough about SA, so he started this morning has done it twice so far, and he said he thinks its helping! so time will tell, we are keeping our fingers crossed, to see his face that something might be working is so wonderful to see, so we really really hope it does, makes me want to cry to see his face in total desperation as to what  to do next!

As you can imagine, it is affecting our daily lives, but in saying that in many ways its effecting me more as I am not sleeping enough, we are now living together have been for 6 weeks and  will be permanently, in many ways i am so pleased so 'I can keep an eye on him' I am an expert now on knowing how many hours he has slept, I am such a light sleeper anyway, its my second nature to record the times!  I know it also helps him to know he's not alone, but that is a bit catch 22 because he has these new depression tablets which are making him feel as if he is in a haze and very insular (which is not good for us - but I understand) and putting weight on unfortunately, I still feel he doesn't need them as its the frustration of not sleeping and working really which is the problem, but I know he is grabbing at straws.

Anyway, thats our situation at the moment, just wish him luck and will let you know how he gets on!

Thanks for reading this, makes me feel better to get my frustration out a bit.

Jilly,

So glad to hear that Keith has gotten some relief from the saline nasal rinses.  Keep us posted and let us know how he is getting along.

Were you able to get a good sleep doc to look at Keith a second time, or at a follow up visit?  Something isn't right.  His nose is sore on the inside, he still can't wear the mask, his quality of sleep is very poor, and he is now on antidepressants.  I sure hope there is someone who is helping you sort through these issues.


_________________
Dianne's: Remstar Auto M, C-flex, humidifier, smart card. Mask: Swift LT, AHI- 23, lowest blood ox 80%.

John's: Same cpap, Mask: Respironics Profile-lite mask.
severe apnea, Cpap user for more than 20 years.

Hi everyone,

Just an update to all you helpful lovely people - Keith now has a humidifier has had it for about 2 weeks,  and guess what no sore nose! its wonderful, he was very very wary of getting another one, but it is with my persistence that he did try again.  The technician that came was so helpful and explained things and now there doesn't seem to be a problem, such a shame with his last experience because it was a different technician then that didn't tell him how the humidifier worked  properly hence the reluctance to try again!  

One problem that I have (theres always something isn't there) and Im not sure what we can do about it is with the noise of the humidifier, once the water warms up his mask 'sings', some nights its like a cats chorus,  and sometimes it sounds like a harmonica, the other night it sounded like violins being tuned in, always in triple which is weird, it sometimes stops but mostly it goes on all night, unfortunately when its at its peak for a few hours, I give up sleeping, so of course im more tired then him, anybody any suggestions as to what to do?  thats if there is anything else we can do!  I do not say too much to him because I am just so pleased that he is sleeping well, but of course im suffering now, im not complaining really, im just thinking there must be something we can do to help a bit.  Just to let you know, he has tried to put 'too' much water in and that did help, not sure if thats a good thing to continue doing but  could hear it bubbling a bit, if thats any indication.

Just realised its 2am in the morning for you all in Americas its 9am for us so hope you are all sleeping like babies!

Take care

Jilly

Hi Jilly, it's so good of these Americans to let us all in on their forum, I really appreciate it.  It's nearly midnight here on the other side of the world, so there's usually someone not too far away from answering a post.

I think the singing noise could just be a fault with some part of the equipment, and the technician or whoever visits with the equipment should be able to help. (That is, unless anyone else here is aware of a specific issue with the machine Keith is using).  I think its the same as my machine, and I remember not being able to use my humidifier initially because it screeched very loud - silly technician had not included a manual with the machine (they are sent by courier). I had to phone and ask him, and then i downloaded the manual off the internet. The solution was to make the lid click down properly - real simple.

There are many minor issues to sort out with each new aspect of treatment, so I hope you always feel you and Keith can just ask about them, no matter how small they seem.  Chances are they are easily fixed and can make or break successful treatment.

I learned today that many anti-depressants or similar mental health medications can be a factor in central sleep apneas.  I just wish my SA had been picked up before I ever started taking them.  Anyway, just a little 'factoid' to keep in mind.


_________________
"Attitude is a little word that makes a big difference" - Winston S Churchill
Machine: Respironics M Series Pro, 17cm
Mask 1: Respironics Comfortgel nasal
Mask 2: Resmed Quattro full face
37yo female, New Zealand, Mixed SA, AHI 45

Jilly,

The singing mask sounds like it may be from mask leaks.  Try havign him fit his mask at full pressure.  If that does not help people here have suggested using a pliable ear plug.  I do nto knwo what country you are in but you can look then up on the internet and see if they are sold internationally..or an equal.  BTW..the earplugs are not for you but for his mask .  They are called Mack's Silicone Ear Plugs.  They can be shaped and formed then used betweent he mask and the face to make a better seal.  That is..if he has a full face mask.  If it is a nasal mask then he is losing his seal.  I have a nasal mask and often use KY Jelly..a non petroleum based lubricant..also here in the US there is Nasal Ayr (spelling probably all wrong) which is marketed for SA.

 Best of luck...he is lucky to have you...and    BTW this forum is for the world...  and happy to have you both here with us!  One of our moderators is from Ireland


_________________
I am A ZOMBIE! 20 years+ undx'd. BiPAP Auto M 14/9. Nasal Swift&F&P Flex Fit 431 Full Face. RLS/PLMD, Primary CNS Hypersomnia, Sleep Paralysis, Parasomnia, Degenerative Disc Disease, Clinical MS, Fibromyalgia, COPD plus other past dx's..what's next?

Thank you both for your replies, KIWI i didn't twig where you are from how silly of me, but so nice to see others from the other part of the world!   Yes the lid does  click down properly, we now have a manual and going to study it in French, so will take a bit longer!  He also has on order a new mask as his he has had for over a year so hopefully that might do the job,  

I feel a bit concerned about what you said about anti-depressants can be a factor in CSA - in which way?

MRS RVW - The leaks from his mask are practically non-existent, we know cos we take the readings (shhh) we are in France and yes I will look into the earplugs (yes i thought you meant for me) he has a nasal mask and as mentioned above he is going to change to a new one and see if that helps, he feels loathe to change as his one has 'moulded' to his face and he finds it comfortable but...... but will try what you said first before he changes if necessary.

So nice to see other people from all over the world, as so many poor people have SA and this seems to be the best forum we have found to be so friendly and informative.

Have a good day now (says me trying to be American)!

You can download a manual in English from the website, but the practice will be good for your French anyway     I love this website too.  I don't have any details on the anti-depressants yet, other than the general observation that any drug with sedative effects or that depresses the CNS (eg alcohol) would slow the respiratory system.  One of the most pronounced examples of this is when women are in labour, and doctors are careful how much and when they give pethidine or other opioids, because it can make it hard for the baby to breathe when its born.  The relevance here is that we should keep these drugs to a minimum... if we need them (like I do) then that's fine, but if someone only has mild depression, then maybe try to get along without them for the sake of the sleep apnea.  Also, its another reason to make xPAP work, because when its working well, it should reduce the need for anti-depressants.  I'm hoping for that!


_________________
"Attitude is a little word that makes a big difference" - Winston S Churchill
Machine: Respironics M Series Pro, 17cm
Mask 1: Respironics Comfortgel nasal
Mask 2: Resmed Quattro full face
37yo female, New Zealand, Mixed SA, AHI 45

What a sweet guy you are! I only wish my husband would have at least a little sympathy for me, but he refuses to accept he has a real problem, and won't wear his CPAP mask- which WORKS quite well. I can't sleep when he's snoring, and I can't sleep when he's NOT snoring because I am worried when he will take his next breath. He doesn't like me sleeping on the couch, he won't sleep on the couch. And yet, he complains that I am "lazy" because I can't seem to get up before 10am and my bookwork and household duties are suffering. Hardly fair by any means. I don't understand his denial at all. I have severe health problems, some of which lack of sleep is to blame, others which lack of sleep only exacerbates my condition(s). Yet he makes no attempt to wear his mask.

I would sleep in another bedroom if we had room to spare, believe me! However, if you guys have that option, I would definitely try it. My Grandparents slept in separate beds, for OVER 70 years! And they had a beautiful, loving relationship. She would go to his bed, to "tuck him in" and snuggle or "other", then as he was about to drift off to sleep she would quietly slip away to her own bedroom. She says that this is what saved their marriage, and I have to agree. So, don't worry about sleeping in separate rooms, that doesn't mean you will lose your closeness. I would consider it a last resort myself, as I LIKE having my husbands warm body next to mine at night, I just wish it was a QUIET warm body!

Good luck to you and yours. At least you recognize that YOU are the problem, lol! That's a step in the right direction.

MO

Hello everyone,

Just an update to tell you how my lovely man Keithy is doing, as you may well know he has come to terms with CSA and has now got a humidifier which is great, the best thing ever for him, no more sore nose, no more red eyes, no more eyes and nose running constantly that is great!  but he still has this problem with lack of quality sleep, for example he can sleep about 3-4 hours without dreams but after that he has awful disjointed, lucid dreams, sometimes nightmares, but he often wakes up just before it gets to that state, but this effects him during the day, very zombeish, off course he is lacking proper quality sleep! Doesn't sound much but day after day it effects your life totally resulting in no quality of life - as you all well know!

As a result of all this he has spent a month in a psychiatric hospital and came out last week, now this sounds awful, but his doctor here had said to the specialist that we have been seeing there monthly (all because of depression and not coping with things and the dreams), that basically he doesn't know what else to do for him, he didnt really know enough about SA so advised for him to stay at this hospital for a while, anyway, the first 2 weeks did him a world of good really, was like a vacation for him, he spent his time reading and writing and basically relaxing and getting himself together, they weaned him off Zanax which apparently he should never have been given for SA, changed the depression tablets, which we are hoping he will not need for much longer as he's not depressed as in an illness, he is depressed because of the frustration of it all, and has Antarax to take as well like an anti-histamine to help him relax at bedtime.  I visited him as much as possible which was great for both of us, but during the third week he was all of a sudden realising where he was, and getting to the state where he wanted to 'escape' bearing in mind he could leave when ever he wanted to, he realised what was all around him, people very mentally ill, he found that very hard to be in the same place as them, now this sounds awful, the nurses there said it wasn't the place for him but there was nowhere else.

Anyway now, he is as we speak, tonight in another hospital just overnight, (we have been waiting for this appointment for 3 months) whilst he is wired up all over his body to monitor what is going on in his head, legs, arms, chest for muscle activity, we feel this is more the true test as to what is going on mostly in his brain, to hopefully give a reason as to why he is having these awful dreams,  so we are really keeping our fingers crossed here as to an answer - because if not, I don't think there is anything else he can do but to live with it.

So we will keep you informed when we know the results.

Using the moldable Mack's Earplugs to seal around the mask sounds like a great idea and one I've never heard.  Thanks for the tip.  My mate also uses these earplugs to block the noise fo the machine so that she can sleep.  These earplugs saved our relationship. There are some other comfy looking styles on their website at macksearplugs dot com.   Sorry to hear about your situation.  I wish you both the best of health. [/url]www.macksearplugs.com

Just another update to let you know that we still have not received the results from his sleep test/scan, so will let you know when we do.

He has no problem at all with his mask now it doesn't even 'sing' anymore, he experimented with the temperature and has it just right, so thats great, he's quite happy with it all, so you might think great no more problems for us, but for him the bad dreams still continue so as I said we are still waiting on the results, meanwhile he is up and down like a yo yo, for example for a few nights he has slept 12 hours, and is awful afterwards, and another 2 nights been waking up at 2.30ish so not enough sleep, but the awful terrifying evil dreams wake him up!  therefore is frightened to go to sleep again, yesterday he slept right up to 1 o clock in the afternoon, was in a terrible state, had to go back to sleep again at 7pm and I woke him at 9pm as I/we need some semblance of a sleep pattern (me being such a light sleeper)he seemed better then, but then got second wind and couldnt go to bed till he was tired which was 3am! meanwhile i just lie there tossing and turning not being able to sleep till he is in bed, I have just woken him up at 9.30am as I think thats enough for him, and I know he agrees with that,

Talking about his twitching, it was near enough non stop and has been for quite a few nights, its wearing him out, I have been searching about PLMD, and it does sound like he may have that, as Vicky has pointed out and indeed poor girl is suffering from. I feel it is a neurological disorder which links in with his CSA , he says the twitching is down his right leg and says sometimes its a pleasant feeling!!!  but of course he doesn't know he is doing it so much in his sleep, he near enough jumps off the bed - the times I have woken up to this makes me jump out of my skin!

Then of course there is the other side of things ie how I feel, we have lived together for 4 months now which is great, apart from feeling more and more just a flat mate, not a partner/lover doing things together, he seems to be in his own 'aura' half the time he doesn't even know I'm there! if I walked around naked he wouldn't even know, he's even admitted that!  I understand that his Libido has gone, been a long long time now, and I am finding this very hard to deal with (Im only human) wouldn't be so bad if he could compensate it with lots more cuddles and kisses and eye contact (he finds that very hard) but no I always have to ask and that;s not right, I just feel like the chief cook and bottle washer as if we have been married for 50 years! we should be in the throws of really having a great time being a new relationship,  I do feel, unattractive, worthless, used and only good for keeping the house clean, shopping etc.  well I am reaching a point where I cannot take anymore, as much as I love him and believe me I do and he loves me, I really dont think I can go on much longer, I wonder sometimes if it is just him, as I didnt really know him for long before he got CSA  When he is fine he is absolutely lovely and couldnt wish for better, but I feel he's going down the slippery slope again.

The reason for posting is to get it off my chest, and also wonder if anyone else has suffered the same as me and if so what the hell did you do????  I am getting to a real desperate state and worried I might make say and make a wrong decision,   I might add he is taking Cymbalta for depression/anxiety, and atirax for anxiety, and Alprazalam if this helps!    Thanks for listening.